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PRESIDENT'S PERSPECTIVE

Hospice and Palliative Care and Saying Goodbye

Morris, G. Stephen PT, PhD, FACSM

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doi: 10.1097/01.REO.0000000000000200
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Rehabilitation Oncology begins another year by publishing a special issue (Volume 39, Issue 1). This year's special issue focuses on hospice and palliative care. The coeditors of this issue generously asked me to contribute to this issue and to focus my quarterly column on hospice and palliative care. Little did they know that their request put me light years beyond the limits of my perspective column's “comfort zone” simply because I know little about these topics. So I have decided that I would write this column from a position of naiveté and see where it gets me!

What is/are hospice and palliative care? The terms “hospice care” and “palliative care” clearly describe different time points along the continuum of care experienced by many cancer survivors. Palliative care is defined as an interdisciplinary approach to specialized medical and nursing care for people with chronic conditions. Palliative care provides relief from the symptoms, pain, physical stress, and mental stress at any stage of illness. Palliative care can be provided in tandem with curative treatment and can begin at the time of diagnosis (and probably should be). The goal is to improve the quality of life for both the survivor and his or her family. Physical therapists (PTs) and physical therapist assistants (PTAs) indeed provide palliative care in a number of well recognized settings including pulmonary rehabilitation, cardiac rehabilitation and neurologic rehabilitation. In contrast, hospice care is provided for a person who is recognized as having a terminal illness that a physician believes gives the survivor 6 months or less to live if the illness runs its natural course. Like palliative care, hospice care provides comprehensive comfort care, as well as support for the family, but treatment in this setting does not include attempts to cure the illness. PTs and PTAs contribute significantly to providing comfort care to the dying. It is easy to see how palliative care may transition into hospice care, but such a transition is not always the case and certainly does not make the two medical settings synonymous. I am not trying to be the word police, but I cannot help but wonder if talking about hospice care and palliative care in the same “breath” is confusing and fails to provide distinctions between these two physical therapy practice areas. Should it be hospice or palliative care rather than hospice and palliative care?

Quite often hospice care and palliative care are spoken as though they are interchangeable terms or they appear in the same sentence, suggesting equivalency. We see it in the table of contents of this issue of the Journal. This semantic overlap is not terribly surprising, given the preface to the leading textbook in this area, Textbook of Palliative Medicine and Supportive Care,1 noted that palliative care medicine emerged as a “response to the unmet needs of terminally ill patients and their families.” The word “hospice” did not appear in the preface, but the authors of the third chapter of this textbook did note “...that the early principles of hospice care were reshaped into what we now call palliative medicine.” The authors noted the United Kingdom and Ireland had a long history of caring for the dying, incurable, and chronically ill in precursor “hospices, homes, and hospitals.” So it would seem that this blurring of definitions has a long history. Does it matter? Perhaps not, but still....

Given the history and therapeutic intent of hospice and palliative care, it seems reasonable that the Academy of Oncologic Physical Therapy serves as the “home” for these physical therapy practice areas. Not so terribly long ago, a cancer diagnosis was almost assuredly a death sentence. The same cannot be automatically said about patients treated by members of the orthopedics, hand and upper extremity, or sports academies. I suspect many of us do not view most patients with a cardiac or pulmonary diagnosis as requiring hospice or palliative care, but many of them will ultimately need these types of care. What does not seem reasonable to me is the “siloing” within the component infrastructure of the APTA. The Academy has already dealt with this issue in the recent past when the leadership of the Pediatric SIG attempted to make their SIG available to the broader membership of the APTA. Reasons that brought this well-reasoned effort back to harsh reality included challenging technical issues, concerns over access to multicomponent membership lists, cost and remuneration, and limitations imposed by various bylaws. The Pediatric SIG did not prevail. Pediatric care and hospice or palliative care are clearly niche practice areas that do not rise to Academy/Section status, but nonetheless do cross-defined practice area boundaries. For example, patients with heart failure, emphysema, and end-stage renal disease are all likely candidates for hospice or palliative care. What are the odds that these Academies will create hospice or palliative care SIGs. Probably pretty low and nor should we expect them to do so. What we should do is facilitate the ability of the Cardiac and Pulmonary membership to easily, conveniently, and reliability be able to make use of the Hospice and Palliative Care SIG in our Academy. How many falls and balance SIGs are needed? Imagine what could be created if these groups were encouraged to come together and given resources to create a super SIG. Given the rarity of a pediatric cancer diagnosis, why shouldn't a PT or PTA be able to turn to the Academy's Pediatric SIG for assistance and insight and to do so simply, conveniently, and seamlessly. Who is the loser in the current arrangement?

Please allow me to now completely change gears. This piece is my last contribution to the Journal's President's Perspective column. It is truly bittersweet. I tried to be less newsy and more practice-focused, using my strong suit exercise as the jumping-off point for a number of my columns. Hopefully, these Perspective columns gave everyone things to think about and discuss over lunch. Only one column brought me severe criticism in the form of an anonymous letter, and I was disappointed that the author failed to identify himself or herself. The editor and I were equally interested in providing this letter writer with space in the Journal to make his or her case as to why I had erred in describing the differences between PTs, PTAs, and cardiac rehabilitation professionals. The column describing the poor care that a family member received in the days following a severe spinal cord injury was personal, cathartic, and gut-wrenching to write as this was the hospital that would be providing him with his care until he died. I have written about early mobilization, monitoring blood pressure, specialization and the changes it would bring, oncology rehabilitation home pages and their relative obscurity, exercise scientists, and ever-changing guidelines. Now as I reflect, I am a bit amazed at what I went public with! Writing this Perspective column was fun and educational, although it was demanding and added another deadline to my calendar. Thank you to our editor for teaching me how to improve my writing and reminding me to include things that I so often overlooked. Laura Sheridan takes over the Academy presidency in February at CSM. She is a clinician and reasonably new to the administration of the Academy and will provide an entirely different approach to this column, which will, I am sure, prove to be insightful, interesting, and challenging.

My departure demands several shout-outs. First, to the current editor of the Journal. Dr Cindy Pfalzer has completely redone the Journal, literally from stem to stern. She gave the Journal a new look and feel, improved the quality of what appears on its pages, and lobbied tirelessly on behalf of the Journal and for broader access to the contents of the Journal. I think I speak for the membership; Cindy job well done, and your efforts are much appreciated and will certainly have long-term effect. Quite clearly, under her leadership, the Journal took on new and greater importance in the arena of oncology rehabilitation.

I am excited to see Dr Mary Fisher assuming the role as editor. This bodes well for the continued advancement of the Journal and hence its relevance to oncology rehabilitation. Dr Fisher proved to be deeply committed and highly creative during her tenure as Senior Editor. I look forward to seeing what she has in store for the membership in the future.

Another shout-out goes to Suzie Callan, who made it possible for me to function as the President of the Academy of Oncologic Physical Therapy. She deserves so much more than a thank you, but Suzie this thank you is from the very bottom of my heart. You made it possible for me to serve the membership of the Academy, an opportunity that turned out to have meant the world to me.

Thanks also go out to Andrea Allison-Williams, the Journal's publisher at Wolters Kluwer. She tolerated nearly missed deadlines and often significant changes in proofs of the column. When asked about the problems I thought that I may have created for her, she simply deflected the question and moved on.

My last shout-out goes out to every member of the Academy. The Academy is very, very different from what it was 4 years ago; it is stronger, more vibrant, and poised to add much more to our profession. None of these changes may be attributed to me; all of them are attributable to the members of the Academy, members who stepped up and took on new challenges, members who identified new opportunities for the Academy and its membership, and members who took on new roles within the “APTA mothership and within the Academy itself.” I simply advocated for individual members and for the membership as a whole whenever and wherever I could. I leave with the belief that advocacy was my strong suit.

There are lots of individuals to thank for all that they gave me over the past 4 years. I hope to express that appreciation in person over the next few weeks and months. Please know that serving as president was an honor and a privilege, an incredible capstone to my career.

Godspeed, everyone.

Steve Morris, PT, PhD, FACSM

REFERENCE

1. Noble B, Winslow M, Bruerea E, Higginson I, von Gunten CF, Morita T. Textbook of Palliative Medicine and Supportive Care. 2nd ed. Boca Raton, FL: CRC Press; 2016.
© 2020 Academy of Oncologic Physical Therapy, APTA.